Raising Awareness for Professionals: Advice from people living with early stage Alzheimer’s or other dementia.
This document was created by Angela, Cece, James, Leslie, Pam and Paul. We are all living with Alzheimer’s disease or another dementia. We strive to raise awareness in a way that benefits professionals as well as others living with a dementia diagnosis.
Please speak to us directly, not just our care partners. Please deal with us in the same respectful and polite manner as you do any other adult. Simply smiling will help to put us at ease and reduce our stress!
We are less resilient in stressful situations, therefore please speak in short and simple sentences. Explain slowly and very clearly all measures that need to be taken. Please be sure we understand and give us the chance to repeat your instructions back to you before moving on.
We understand best when we’re having a conversation that is give and take rather than one way. Please don’t rely on a quick verbal “download” of information as that will be difficult for us to understand and remember. It’s extremely important that you pause to encourage questions.
Be patient, wait a little longer for our response and allow us time to write things down. If prescribing or recommending medication or supplements, please write down their name(s) (include trade and generic names) and instructions. Please list all upcoming treatments and instructions, and describe the pros and cons (including potential side effects) of all treatments and interventions.
Please look beyond medications, and let us know other interventions that could help us live our best lives. Can you recommend dietary changes, behavioral changes, support groups or other lifestyle changes that could be of benefit? Please provide written information about these options.
Please ask us if we need assistance with relevant paperwork.
Don’t question the validity of my diagnosis if you don’t observe my symptoms during an appointment. While I may appear “just fine” to you, I live with my symptoms every day, and to have my cognitive status questioned following a brief interaction is invalidating and could result in delay of proper treatment.
We know this will take extra time for you, and we want you to know that we appreciate your efforts to help us feel informed and included in decisions regarding our well-being.
For more information on early stage Alzheimers and other dementia visit our website.